One step back

Its frustrating. its saddening and damn right maddening.
Many years ago one of the physios I was seeing spoke to me about applying for disability allowance and disability benefits. At the time I was a little offended. I was so stubborn that this was not a permanent thing that I would get better. This week has been a bit of a shock. It appears that the new pain down my left hand side from back to knee is from a group of muscles working too hard to compensate for the fact that some of my pelvic muscles just dont work. The fear is that this is permanent that where the msucles have been cut through for surgery some have not reattached and no longer work. There is nothing that can be done if that is the case, and although I am in less pain then I was pre surgery and I am happy about that. I would be left disabled and in need of at least one stick permanently. Not so hard to swallow to be honest. Out of all this I have a beautiful daughter. Had I become injured in a car accident I would no doubt find it harder to take. What I do find frustrating is the ridiculous system in place tryign to get disability benefits etc. Its a red taped different world of jargon and reason I can't understand. I kind of wish I had done it all years ago - I certainly would be much better off. I am not particularly good at beign pc so I may offend some people with this. But how can I be disabled. I have only had a baby - almost five years ago. A perfectly nautral act that occurs every day. How has it left me like this.
How do I get benefits? Do I bother? Well yes the money woudl be nice but am I morally entitled to it? I haven't done anythign spectaculor. I haven't been out defending my country on the streets, I haven't been protecting my country and others fighting with sub standard equipment, do I deserve this?

Oh my aching bum - spd 5 months post surgery

Well as the title suggests I am now 5 months post op.  I could not have imagined how much hard work it has taken to get here, the ups and downs, the lows and highs - literally, and the feeling of pride when I see how far I have come.
I have suffered with spd or pgp for five years.  I have put on weight which was incredibly depressing.  I had to give up my beloved tae kwon do which not only meant losing my fitness but I lost many friends through this too as we no longer had things in common and to be honest I think I scared of them. I struggled to keep up with my daughter who seemed to grow in leaps and bounds in the blink of an eye and my relationship with my husband has certainly  been tested.
Today I can see a future though. I have lost 3 stone since the surgery and am so close to my pre pregnancy weight I am delighted. I know longer have the dull ache in my back and hip that radiates from the pubic bone and I can sleep pretty much through the night without having to wake for pain killers. None of these things I would have been able to do without the operation.
I am still in some pain - and worryingly some of it is a new pain. It runs from the inside of my groin round to my left buttock and down the left thigh bone. I have no idea what it is and my physio and hydro therapists are hoping its just due to increased exercise. The plan is to see if it subsides in time. I am back seeing my wonderful surgeon on the 3rd November and I can't wait for him to put my mind at rest on the latest pain. Whatever it is though I am sure I am better off now than I was.

I can't believe its September already

Wow not sure where the time goes because I don't feel like I do an awful lot. The summer has flown by and we spent many days just me and Molly going to the beach or soft play places and zoos.  It took a long time to get around most of them and each visit rendered the following day a lazy day as I was generally unable to move. I am still on the full dose of tramadol and the plan is to start reducing them from Monday next week - wish me luck because I will need it!
I have started hydrotherapy this week and have also been given some land based exercises to do. My therapist was lovely but the other ladies in the pool say she is too hard on them.
Have you ever done hydro? Its a strange thing. You go into the changing rooms in the local hospital and put on your swimming costume and one of the hospital dressing gowns. You have to sit around a table at first and drink some water whilst you wait for the group before you to finish. Everybody wants to know what everyone else has done and if they have had surgery. You are in groups so my group are all post op with lower limb issues. The guys are mostly rugby or football injuries, the older ladies hip r knee replacements and then there is me. The boys are not particularly interested - I imagine it must make them squirm a bit but the older ladies want all the details!!
Anyway once in the pool - which is near body temperature you all do your own exercises set by the therapist she checks up on you every few minutes. Some people are keen to get on and try more - which results in a telling off in case they ruin the surgeons work others complain of the pain and you can hear the therapists trying to encourage them but also biting their lips and seeming unwillingness to get better. Getting out of the pool is hard work, as you suddenly hit cold air and have your full body weight back. I shower and dress and book in for next weeks appointment, I have to make note of when I get pain etc so they can see if we need to up the exercises or cut back on them.

My Big Day was the best ride yet

Andy and Molly were both coming with me today. Andy couldn't take another day off work so spent a lot of the time before we left sending mails. I was getting more and more wound up about the appointment and struggling to get Molly ready, toys for her for the journey and enough snacks together for the day!
When we finally got there after sitting in traffic forever I want off to x-ray whilst Andy took Molly off for lunch. I didn't want her to hear some of the conversation I wanted to have with the surgeon, which was a shame as it meant Andy missed it.
When I got back to orthapeadics he was really laying in to trainee registrar. It was really quite funny. The poor bloke was so embarrassed as he knew I heard every word. My surgeon is very good and therefore a little arrogant, he seems to be able to charm or disarm people as he wishes. When I was called into the surgeons office to look at the x-rays I was so relived. All the pins are in the right place. We looked over all the old x-rays and everyone was impressed at how far out my pelvis was and to where it sits now. It feels amazing to know all the pain and the tears have been worth it.

One stable pelvis (with a little metal work)

I have another 3 months of being very careful walking and using the crutches outside the house but if I am sure I am absolutely fine I can lose them sooner. I have a lovely letter for my local hospital to ask them to start physio and hydro too. That will be the best bit seeing how much I can do and working on little exercises or something to start making it all better. I can't wait to get back in that pool.

I go back to the surgeon in another 12 weeks. I shall be stick free and addiction free by then just you watch!

3 Months on

I can not believe it has been 3 months now since i had my operation. I have hardly used the wheel chair this month at all.  I am now pretty free to move around the house unaided too. All this has made a big difference to being able to look after Molly.

I am still taking all the tramadol. I know I am dependent on it and can tell if I am only a few hours late missing a dose, not just because of the pain levels but I also start to feel agitated and emotional. I am amazed at my dependency on the drug (and a little scared). Hopefully I will be able to talk to my new doctor about this soon and work out a plan to come off the tramadol without experiencing the withdrawal. I am also still on warfarin to prevents any clots. Although there is not really much of an issue being on warfarin apart from staying away from sharp knifes and having to have weekly blood tests it would be nice to not be taking drugs continually.

I have met with a few old friends this month too. People I have not seen since before the operation but who also knew me before I had Molly. They all think I am not only looking more like my old self but acting like her too. I am glad I look better I only hope its a good thing I am acting differently too!

Tomorrow is a big day. We are back at the hospital again for more x rays and a review from the surgeon. I am hoping tomorrow I will be given the all clear to start physiotherapy.  I think this will be another big step in the recovery as this will help me use the muscles correctly now that the pelvis physically can no longer move.

Think good thoughts for me please and pray if you do

Saturday 26th June - withdrawal

I don't quite no where to start with this, so here is a brief update. The last few weeks I had been doing great felt like I was turning some big corners. I can walk a little further and was getting used to the pain. So much so that when I started to run out of pain relief.  I didn't realise the implications. I am down to only really relying on Tramadol now, so when I noticed I was low I phoned the surgery for a repeat prescription who said the earliest would be Friday lunch time. I had only enough for one dose and I needed two. So I missed the night time dose and took some other fairly strong relief instead. I couldn't get to sleep and the next morning felt incredibly teary and frustrated. I was scared to take the tramadol now as I recognised these symptoms for the withdrawal I suffered coming off of the morphine. I began to panic and phoned the doctor. He explained he has already signed the prescription for tramadol but would issue another for something else if I wanted it. Wanted it? I don't know what I want but I know I am not right. I wanted someone to take charge and tell me what to do. I phoned Kate instead - we arrange to meet at the chemist. After I pick up prescription we sit in the coffee shop. Kate is worried. I collect Molly from preschool and Andy takes us home. That night the pains start. I have stomach cramps, sickness and diarrhoea and the shakes and sweats soon follow. I have no idea what to do. I start seeing things and really begin to panic. By morning I am a wreck. Andy is taking Molly to ballet and I know I can't be alone. I have a hair appointment already booked so I decide the best thing is to go to that rather than be alone.
As I sit in the hairdressers for nearly 3 hours. I regularly leave to be sick and have to explain why I am ill. I decide to phone NHS direct who advise to get to a walk in clinic or hospital asap. I leave with gorgeous hair and the body of the dead. At the walk in clinic there treatment is amazing, I am advised to get a new doctor who should refer me to counselling and also manage withdrawal, I am put back on the same high dose of tramadol and told I should be weaned off over 5 months.
I am unable to cope with Molly this afternoon so whilst Andy takes a much needed nap a friend looks after her while I go to another friends for coffee. I let it all pour out and sit and cry for hours. I feel a little better after!
So, I have now registered with a new surgery and already seen my new doctor. He seemed a little surprised at my account. I shall make another appointment to see him soon to discuss moving forward.
So that's it really back on the painkillers and living life with crutches or a wheelchair.

Friday 11th June

I have Molly to myself this evening and it is the most beautiful evening in a long time.
Andy has gone back to Coventry to watch the England game so my friend collects Molly from nursery for me.
I explain to Molly she needs to be extra good and help me help her and she is a dream. She helps me in the kitchen make her dinner and offers to lay the table. Although to be honest this was a waste as we sat on the couch and watched scooby doo whilst eating dinner instead.
At 7.00pm Molly announced it was time for bed. We went upstairs and read a book and then Molly said night night. I made my way down stairs and did not hear a peep out of her.
I am so proud that even after all the changes to what routine we did have my lovely lady knows how to behave to help her mum.